Category Archives: Rare Disease Day

It’s Rare Disease Day. You may be wondering what the heck that means. What is the purpose of Rare Disease Day? According to rarediseaseday.org:

“Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”

In honor of the day, Zack decided he wanted to paint his face like many other people with rare diseases are doing. He is hoping that his friends will ask him what his face paint is for so that he can explain rare disease day to them. He wants his classmates to know that rare diseases affect a lot of people. In fact, 1 in 20 people will live with a rare disease at some point in their lives. He wants them to know that there are many different types of rare diseases, many go undiagnosed (Zack), and many have no cures. If you live near us and see Zack today, be sure to ask him about his face! Just look at that cuteness:

I hope that seeing Zack will inspire you to read about rare diseases here. Chances are you know someone besides Z with a rare disease. Maybe this will give you a better understanding of how families like ours live.

I am finding it hard to find a way to segue into my next topic. Please forgive me. My brain is tired.

Zack is currently doing about the same medically, although these past few days have been a bit challenging. His belly is currently distended and painful. He is able to eat and go to school and play, so it is not a medical emergency. However, his stomach is noticeably bigger and his output is noticeably lower. I spoke via text with his doctor for our monthly Z update and told him my concerns. He agreed with my suspicion that Zack is probably having an intermittent partial bowel obstruction. This is not new for Zack, sadly. My concern is that partial bowel obstructions can lead to complete bowel obstructions. Jim and I feel confident that he is doing okay for now. My mama radar is definitely on alert, but at a low level. I’m hoping it stays that way.

Speaking with Zack’s doctor is always reassuring and having him agree with my (our) assessment helps ease my anxiety. I wish it could help Zack feel better as well…but I will take what I can get. Zack’s doctor reminded me that given his surgical history, we do not really want to mess with him – unless it becomes worse. Jim and I totally agree. The lesson here? Go out immediately and buy stock in Tylenol and Motrin. We are single handedly increasing their value. You are welcome for the tip.

In addition to his belly, Zack is continuing to have a hard year in school. His ADHD medication continues to be an issue. Between the Quillivant debacle and trying to appropriately dose his new medication, his ability to focus has been severely affected. He is struggling in many areas, but especially in math. We had an IEP meeting today to discuss many things. Hopefully we have come up with some new ideas of ways to help Zack be successful in school. Watching him struggle is hard and frustrating and exhausting. Jim and I continue to advocate for him and appreciate all of the ways his school is trying to help him.

Although all of these things are challenging for Zack, he continues to meet each day with a smile. I am constantly amazed by that and grateful to be his mom.